Category: Coping

My Hysterectomy: Grief, Regret, & Joy

Grief, like so many emotions, is an experience that relentlessly evades my expectations no matter the circumstances. It doesn’t matter how many times I try to “practice” a future incident or attempt to troubleshoot how I’m feeling. Grief is stubborn. Grief is creative. Grief is necessary. But goddamn… grief is a bitch.

This summer, I lost so much. In rapid succession, my life began to shatter and splinter outward in sharp, crackling edges. Let’s just say– if I’d been given a bingo card with the events of my life in 2022, I would have bet my existence there wouldn’t be a single winning bingo on it. But here I am– holding a tattered bingo card that’s been stamped so many times the ink has begun to bleed. 

Grief’s gnawing, grating lament has been present for so many months now that I hardly feel it most days. But grief has found a new way to make me hear it again in the most unexpected way. This grief is like the ground after an earthquake, when the earth begins to liquify and water bubbles up through the cracks. This grief is unique, and feels decades old. And I suppose it is…

Grief, Regret, & Joy

In August 2022, after 20 long years, I was finally able to receive a total hysterectomy. I’m a trans nonbinary person with Polycystic Ovarian Syndrome (PCOS) and persistent gender dysphoria, and I have been fighting to receive this medical intervention for two thirds of my life. This victory should make me happy. It does make me happy. Indescribably happy.

But alongside this relief and joy is a dark swirling void in my chest that pulses sharply and shrieks to be heard. This void reminds me of things pushed into cages in the back of my mind.

It reminds me of 20 years of horrific and debilitating agony from large ovarian cysts that ruptured routinely throughout my life from ages 12 through 32. It reminds me of missed classes and days of work. Frantic trips to the ER. Fearful menstrual periods waiting frozen with terror for another bomb to go off inside of me. Invasive tests and stoney-faced unlistening doctors. 

“Alongside this relief and joy is a dark swirling void that pulses sharply and shrieks to be heard.“

This insistent grief paints an uncanny and unwelcomed image of a 12 year old kid blacking out while home alone and waking up to a still-present, gut-wrenching pain that sadly wasn’t just a bad dream.

And more than anything, the black swirling void in my chest stirs and coils into a viper that reminds me that often with grief… comes rage. The viper in my chest spits out echoing reminders of betrayals and failures to protect. Of the hippocratic hypocrisy– “do no harm”. The echoes summon the memories, accompanied by the haunting grief… the rage.

“This shouldn’t happen again. It’s rare. You don’t need to worry.”

An image of a 12 year old terrified to walk down the stairs, scared to somehow set off another bomb inside. 20 years of it happening… again. And again. And again.

“Take these and it’ll stop.”

A just-barely teen cycling through half a dozen hormonal birth control medications, quickly followed by a quick succession of anti-depressants, chronic pain, and intense suicidal ideation.

Lots of pills of all different shapes and sizes and colors

“You don’t know you don’t want kids. You’re not 30 yet. What if you change your mind?”

A child, teen, then young adult begging for help from doctors, insisting that no child– even if it were wanted– is worth this daily dread. This indescribable agony that makes life seem unlivable.

“It’s just part of being a woman.”

A too-young child learning to dissociate so far outside of their body that the pain the body feels is like a flickering candle in a distant galaxy.

Dark galaxy with a faint moon

“Only come to the Emergency room if you’re bleeding through an entire pad.”

A young adult gasping, “I’m fine. This is normal.” while inwardly praying to either black out or die. Anything to escape the all-consuming pain that makes their vision go white.

“I’d trade you if I could.”

A confusing rage and deep, unfathomable sorrow that pools around the viper swirling inside.

Grief, Regret, and Moving Forward

I’m still not sure what to do with the gritty heaviness of this grief. This grief is dripping with poisonous rage and there’s nowhere to place it. No single person to direct it toward, demand answers from. Yet holding it inside grows challenging. How do you coil your rage around a systemic cage? 

This rage is a part of my grief that I cannot lock away. Its molten heat merely melts the lock. I don’t know how to honor this anger. I don’t know how to look back at my past and tell my younger selves that they did everything right. They did nothing wrong. It wasn’t that they didn’t say the right words or do the right things. They tried so damn hard to be heard. They collected countless bruises and traumas, and they kept going anyway. They grew to be a warrior far stronger than many grown adults ever need to be, and far, far too young.

As reproductive rights continue to be challenged throughout the country, I grieve and I rage. Bodily autonomy is already denied despite documented “medical necessity.” Further barriers to medical care seem insurmountable in an already cruel and inhumane system which deliberately and callously silences minority voices.

And echoing in my mind is the question “Who defines ‘necessity’?” This question haunts me through my grief and my rage.

I look back and tell my 12 year old self…

“It was a necessity. It was a necessity for 20 years. It’s time to let yourself feel again. I am so damn proud of you, kiddo.”

Navigating Autistic Grief & Anger

Emotions are often a daunting endeavor for me. I struggle to identify how I am feeling, then struggle to emote the feeling outwardly in a way others interpret correctly. (Or more often, I painstakingly mask it.) I especially struggle to let myself feel and sit with my feelings—particularly grief and anger.

When I think about it, there are actually many reasons why I shy away from both grief and anger.

Intense bodily and sensory experience

These feelings are often accompanied by uncomfortable things like: nausea, dizziness, buzzing electric limbs, stuffy nose and wet face from crying, elevated heart rate, clenched jaw, tensed muscles, etc.

They feel incredibly all-consuming

Both set off a fight/flight/freeze/fawn response in the amygdala, and that sends my brain into a hyper-focus on the “problem” of my emotion, like it’s some sort of math equation I can logic myself out of if I crunch the number just right. (Yikes?!) And it feels like I will never not feel the all-consuming emotions again— like no other emotions exist or will ever exist.

They make me feel out of control

I don’t mean “out of control” like smashing dishes or slamming doors; I mean “not feeling safely in control of my feelings.” I’ve spent so long repressing and locking away “negative” emotions like anger and grief that feeling and expressing them feels so utterly unnatural to me.

But that leads to a vicious, self-damaging cycle. I automatically repress my anger and grief for a whole host of reasons:

  • Masking by default
  • To avoid bringing attention to myself
  • To avoid further conflict or uncertainty
  • To have some amount of control in something (imagined or not)
  • To give myself more time to process at my own pace (or… not process, apparently…)
  • Feeling like an inconvenience or burden for showing them
  • To spare other people’s feelings
  • To not appear selfish when others are also upset (pain comparison)
  • To be a caretaker or support, always to others and rarely for myself
  • Not wanting to have or feel them (avoidant behavior)
  • Thinking I am a terrible person for feeling them
  • Not realizing that I can feel more than one thing at once (and that they can —and often are— contradictory!)
  • Because I often don’t think I deserve the time and space to feel them
  • Thinking that it’s somehow “childish” to feel

“But Alex, what happens to those feelings then?” you may ask. (Let’s pretend you asked. I’m feeling a bit lonely today. How are you?) Well thanks for asking totally and completely unprompted, dear reader.

Until recently, my answer would have been “I just don’t feel them” with a nonchalant shrug and a misguided feeling of pride and strength. But the issue with stuffing all of the anger and grief into boxes and locking them away is that eventually… the box can’t hold it all anymore.

No matter how many locks I add; how many chains, ropes, and weights… anger and grief are not content to remain contained indefinitely. When I don’t allow myself the time and space to feel, these boxes are ultimately stored in my body. In my tensed jaw, tension headaches, scattered thoughts, tight muscles, fluttering stomach and heart. Anxiety, depression, panic, obsessive compulsive tendencies.

Only when I am pushed to the absolute breaking point do those boxes shatter and I feel everything. All of the build up from weeks, months… sometimes years. All at once. Such an irony that some of my only experiences really feeling both grief and anger (and the overwhelming nature of both) are massively amplified by the sheer volume of emotion built up and not yet processed.

Slowly, I am learning.

The lessons I am learning are slow to come. They are inherently unnatural to me, and my neural pathways fight with all they have against veering off course. It feels terrifying to my brain to stray from what “keeps me safe” (faulty defense mechanism). But faint pathways are beginning to glow ever-so-slightly alongside the glowing stubborn hardwired paths.

  • I cannot control my emotions. I may shove them into a box and tuck it away out of sight, but those feelings only fester and poison me from the inside out. “Out of sight”, it turns out, is actually not “out of mind.” The only thing accomplished is delaying and amplifying those feelings for a later date when the box explodes, often in the least opportune time.
  • Not feeling is not necessarily “strength.” Sure, it can be a protective tool and defense mechanism. It can get you through some horrific experiences and allow you to continue onward. Society tries to shame us into being silent and “strong.” But true strength—and true courage— is learning to take that box of scary “negative” emotions down and open it.
  • It’s ok to put feelings into a box short-term. I don’t need to feel all things all the time. I don’t have to be overwhelmed constantly. The difference is that the box needs to be taken back down routinely to look inside until it is familiar and routine.
  • Feelings are not rational. They are not flaws. They are not selfish. They are not negative. They cannot be logic-ed away, calculated out, or erased completely.
    • Anger is there to show us when boundaries have been crossed; when we value ourselves and our needs; when we need an alarm to alert us that we are feeling a mixture of many big, underlying emotions.
    • Grief is there because we care. We love. We lose. We mourn. We hurt. We love again. We hope. But we are not our feelings, and both grief and anger are completely acceptable to feel.
  • Sharing feelings with supports is not a burden. Checking in with friends and family about intense feelings is acceptable. Asking if someone has the space and spoons to help you hold that feeling is invaluable, and so many people want to be there to help you do so.
  • It’s okay to feel big things. Allowing myself to really feel these emotions is going to take time, and I can’t lie… I am still utterly terrified by it. It sets off all alarm bells. It sucks. But it’s also a massive relief. I have steps in place to start cracking those boxes open—just a smidge at a time— to vent the barest wisp of emotion out. I am holding space for myself to fully feel the weight of that box before placing it back on the shelf for another day.

And with practice, maybe I won’t need a box with so many chains.

31: Complex PTSD

I recently realized just how many of my mental health struggles actually relate back to one thing. Trauma. I would argue that most Autistics sadly experience some level of trauma in their lifetimes. Many of us experience prolonged and repeated exposure to trauma and the results can be devastating. For us, we deal with Complex PTSD, or C-PTSD.

I cannot state enough: astronomical content and trigger warnings for this piece. Take care of you, please!

I’m honestly still learning about C-PTSD and how it affects me. It’s complicated, but to summarize incredibly briefly: PTSD is often related to one event. Complex PTSD stems from multiple traumas, and/or longterm trauma. Although many people know about PTSD because of veterans with the disorder, anyone can have PTSD from a wide range of traumatic events and experiences. Symptoms can include: depersonalization, derealization, dissociation, panic and anxiety attacks, flashbacks, loss of sense of reality or time, emotional deregulation, memory loss and issues, and more.

For the longest time, I knew that I suffered from some level of PTSD. But my misunderstanding of the condition in general– coupled with lots of dissociating and blank spaces in my memory– meant that I didn’t really understand just how severe mine was. In a recent therapy session, one phrase really struck me:

“I feel like I spend so much of my time thinking ahead and planning for the future in order to avoid reliving my past.”

Those were words that I spoke, but it felt like someone else had said them. It still feels that way, if I’m honest. But it was a big moment, and I said it. (You know something you said was important when your therapist pauses the session to jot it down…) Since that revelation, I can’t stop seeing how my trauma influences my present by forcing me to live in the future, all while seeking to avoid the past.

For example, my perfectionism and wildly unrealistic high expectations for myself largely come from a need to try to protect myself. Maybe if I plan out the perfect conversation, I won’t get yelled at or bullied. If I prepare excessively for a medical procedure, maybe I won’t have a panic attack or be belittled by the doctor. If I take all the right medication and exercise, maybe an ovarian cyst won’t make me blackout again. If I know more about earthquake safety maybe I will not freeze during another large one. If I can just be perfect, nothing can go wrong. Easy, right?

Even if I arguably did something “perfectly,” when the result is more trauma… I blame myself. “I should have said this instead of that. I looked weak so they didn’t believe me. I didn’t think ahead far enough and predict this outcome. I’m a child and need to grow up.” To me, a bad interaction or event or failure is 99% always my fault. I am at fault for additional trauma because I didn’t try hard enough or plan well enough. Its never the fault of someone else or even a general situation or event. It’s ridiculous, but it is so very hard to break free from. I literally torment myself. Or rather, C-PTSD does.

Flashbacks are horrible: I am out of my body and back in that car when I got hit hard enough to be pushed across several lanes. I remember the song on my CD skipping in the dashboard. I remember shaking in shock–that didn’t just happen. I wasn’t just hit… Is the other person okay? Am I okay? I don’t see any blood…

But more devastating to me are the “flash-forwards“. My brain will anticipate all sorts of dangers in extreme detail. Again, I am out of my body and feel like I am actually there. I see it all in full color in my brain and I live it. I have seen my loved ones die so many times, experienced trauma after trauma… and although I know it’s not real, on some level it is. I “experience” it.

The weirdest thing is that so many of the symptoms my body and mind attempting to protect me. Dissociation, panic attacks, fixation, compulsions, flashbacks… they are often my brain trying to protect myself in some weird way. It’s this highly sensitive security system that has faulty wiring and trips at minor stresses. And unfortunately, I don’t seem to have much control over it at all.

And the difficulty is that any stress can trigger any part of my C-PTSD’s wildly messed up security system. I have trauma from so many different incidents throughout my life: car accidents, large earthquakes, sheltering while in Japan when missiles were being tested by North Korea, assault, countless medical traumas, terminal illness and death of loved ones, living in Japan during the 2011 earthquake and tsunami, extreme physical pain and sickness, bullying and power harassment, extreme life-shifting events, etc. But they don’t just stay in their own lane and section of my brain. Oh, no. Medical trauma can trigger flashbacks of car accidents or power harassment. News of another large earthquake can cause flash-forwards of losing loved ones to random accidents.

In fact, any extreme stress can trigger symptoms in any or all of those categories for me. It doesn’t have to be a particular related trigger to set me off. Any extreme stress can. COVID-19 is one reason I have realized just how bad my C-PTSD is, because it’s a bunch of triggers all wrapped up into one, tied with a big-old stress bow. And the unfortunate thing is, it’s all related. C-PTSD affects anxiety, depression, ideation, sensory overload, and more.

The stresses of the world today have triggered my C-PTSD into a realm I didn’t know existed. I dissociate more than ever. This is when my mind goes completely blank and I leave my body for a time. Sometimes I am aware it’s happening, sometimes I’m not. Sometimes I know how much time has gone by, often I do not. I’m getting better at recognizing when it happens, but sometimes I just have to let myself drift…

My flashbacks and flash-forwards come often and in stunning detail. Breaking through those flashes takes extreme effort many many times before I am able to reorient myself. Something that I still don’t have a full grasp of is the memory loss of C-PTSD. There are very large chunks of my life that I simply don’t remember. It’s odd to me that those memories are gone while the technicolor traumas remain… That’s a rabbit hole I’m not quite ready to go down yet.

What’s Helped So Far

1) Therapy

C-PTSD is something I have only really begun to work on in therapy. One thing that helped me pre-COVID was “Worst- and best-case scenarios are not nearly as common as okay-case scenarios.” That helped me a lot to remember that things are often just meh. Not traumatic, not elating. Just meh. In light of COVID, I’m struggling to use this particular skill, but I have hope for using it again in the future…

2) Music Therapy

I haven’t been able to see my music therapist in a very long time, but one thing he taught me is using a particular song to help guide my brain out of flashbacks and flash-forwards. When I am very stuck in loops of horrors, I will hum or sing this song and it will help me transition out of that cycle. Music is the key to jumpstart happier parts of my brain to allow me to break free.

3) Knowledge and Acknowledgment

Just knowing that C-PTSD is an actual, valid thing is huge. Learning about flashbacks and dissociation and having a name for those things. Being able to read more and connect the dots and recognize triggers. Understanding why things are happening and how to start helping myself. Seeing others talk about their experiences. As always, this is why I am sharing my inner world for all the internet to see. Because if just one person finds light in my words, it’s all worth it.

Thoughts from a Quarantined Autistic

I’m writing this post from self-quarantine, practicing social distancing. Luckily, I have no COVID-19 symptoms (so far). I am isolating myself to help slow the spread of this deadly virus, as well as protecting myself as I’m in the higher-risk category. I’ve had a lot on my mind during this first week of isolation and have been struggling with some pretty tremendous mental health concerns.

Despite all of this, I’ve also found some ways to find some calm and order. I want to share some of them with all of my readers—Autistic or not. As a multiply disabled, introverted Autistic, I have a unique perspectives to offer. I generally don’t leave my house much when I can help it; I have a lot of online friends; I’ve been bed- or couch-bound countless time in my life. Social distancing is kind of my default, even if it’s not always my choice.

While my thoughts aren’t going to help everyone, they may help someone. And that’s all I can hope for.

1) Keeping any routine possible; Adapting what has to change

This is something I practice anytime I cannot follow my normal routine in general. Keeping to a routine—even an adapted one—is key to my mental health. Because I also have ADHD, that can sometimes be tricky, but routine doesn’t have to look like a rigid frame. It can be bendy and flexible if that’s what works for you. A step in your routine can be as simple as “In the mornings I will do something relaxing before work.”

Even though I am working remotely now, I have been doing my best to get up and go to bed at the same times. I eat breakfast at the same time, and start work at the same time. That familiarity and rhythm brings comfort and certainty in a very uncertain time.

But what about things that have to be changed? For example, what if you usually visit your favorite coffee shop with a friend after work? In cases like that, I Skype that friend, brew some tea together and talk as usual. Usually go to the gym at night? Look up YouTube videos of workouts you can do at home, and work out during your usual time.

It’s not the same, but it’s familiar and that can bring calm. It’s taken several days of my “new normal” routine to feel natural, but now it brings me a lot of comfort when I’m anxious.

2) Putting locks on social media apps & limiting news

I often compulsively check social media during my downtime, partly because so many of my friendships are online, and partly because I find social media to be a nice distraction. But right now, that’s not the case. I find myself getting sucked into hyper-focusing on news, perseverating on local events, and worrying about friends and family (and everyone in general).

I ended up setting up Screen Time on my phone for all social media apps. That’s a setting on iPhones that can help you control your app habits; there are similar things for other phones. I gave myself a 30 minute cut off for social media. That means when I reach that 30 minutes, a notification will pop up and let me know. I then have the option to snooze that reminder for 15 more minutes of viewing time, turn it off for the day, or just close that app.

I’m finding that this helps with executive dysfunction and getting trapped in a loop, losing hours of time to stress and panic. It’s nice because it also doesn’t make me feel out of control. I am able to dismiss the reminder, and it will remind me again after 15 minutes when I can then decide again if I need a break or not. It holds me accountable, but also gives me the power of choice when my brain can’t necessarily regulate itself.

3) Dual tasking when I need distraction

I’ve found that if I try to sit down and do something to relax and distract myself from the current situation, I will end up either doing something else by accident or heavily dissociating. (Sometimes both because I’m an overachiever.) That’s not helpful, and actually really distressing!

In the last week I have turned to giving my brain dual tasks. For example, I will cross stitch while listening to the TV. I’ll listen to an audiobook while I play a simple game. Color and listen/sing to music. That’s been the key to me sticking with a distraction long enough to actually de-stress! I’ve finally been able to relax now with that strategy and it’s doing a world of good for my mental health.

4) Being gentle with myself regarding mental health

(Content warning: eating disorder, OCD, mental health spirals, etc.)

In the last few weeks, I’ve definitely noticed an uptick of mental health issues in myself. My eating disorders—even though I’ve been doing really well in treatment—tell me that if I eat too much we will run out of food. Then my wife will have to leave the house and of course she’ll get sick and she’ll die and then I’ll suffer and then I’ll die… Oof. The eating disorder is latching onto very real fears and just running with it.

I’ve also seen a huge relapse with obsessive compulsive issues. I had pretty severe OCD as a kid, but have recovered to the point that I have only really have mild OCD tendencies. In the last week in particular, I’ve really struggled. For example, one night I got “stuck” in the shower for 30 minutes, washing my whole body several times, then standing there as my brain told me I still have the virus on me and if I get out now I will murder everyone I know and love. I couldn’t seem to make my body move. So I thought maybe should call to my wife to come help me, but my brain said if I did, maybe she would trip on the way up the stairs and hit her head! (OCD is a real piece of crap.)

My agoraphobia—which I always struggle with to a certain extent—is absolutely and positively thrilled to have a logical reason to not leave the house. So I struggle to even go on short walks. And I won’t even start on anxiety because… it makes me anxious. Hah!

So yes, it’s been really rough. But ultimately, I have realized that I gain nothing by being critical of myself. This situation is hard. It’s scary. It’s really horrifying. And my brain is actually doing it’s best right now. Strange as it sounds, it’s trying to protect me and it’s just sort of… glitching. It’s similar to the concept that I talked about regarding my chronic illnesses in 28: Chronic Illness: Am I “Broken”?. My body and mind are compromised. And they’re doing the best they can right now. What I can do is be gentle and give myself time to rest and recharge.

5) Positive output

The last thing that’s been incredibly helpful for me is making something positive. My wife and I made a cover video of the song “Tomorrow” from Annie to share with our loved ones. It started as us unwinding at lunchtime and evolved into my wife writing a piano arrangement. We made the video because we needed it ourselves. We feel so helpless and powerless. We did it to uplift our family and community, but we also just needed to do… something, anything! Something to put a bit of happiness and hope out into what is an extra dark and scary world right now.

Putting something out into the world doesn’t have to be extravagant. It can be sending an email to a friend, making a piece of art, sending a gift to a neighbor, or donating money to someone in need… something to remind yourself and others that the sun will shine again.

A picture taken in the woods during fall when the trees are radiant orange. The sun shines through the trunks toward the viewer.
“Tomorrow”, taken by Alex Earhart

29: When You Don’t Believe I’m Autistic

Welp, it finally happened. [Beware (or enjoy?): snarky post ahead!]

Over the last few years, I’ve been coming out to family, friends, coworkers, etc. in an effort to be more authentically me, mask less, feel comfortable in my skin, and help others better understand my boundaries and needs.

I have been very, very ridiculously lucky to have mostly positive reactions when I tell people I’m Autistic. At the very least, reactions have been surprised, but affirming. But I brace for the reaction of each new person I tell because I know that people routinely react ignorantly to Autistics coming out.

And it finally happened. I told someone (whom I no longer work with) that I wasn’t able to take on more of a workload because I’m Autistic and am feeling very overwhelmed. And her response?

Well—laughably—she first completely and utterly ignored me and continued on with the monologue she was currently wholeheartedly invested in. Then about 30 full seconds later she paused and said:

“Wait. You’re on THE SPECTRUM?!? Yeah, okay… we’ll go with that.”

She may as well have rolled her eyes given the tone she used.

She then plowed ahead with her monologue before pausing again and saying:

“Really? You’re on the spectrum? Weird, I can always tell when people are. I work with kids who… never mind.”

So, maybe not the most ideal reaction. (Yes, this is sarcasm. I can do sarcasm.)

Honestly, what I hated most about the situation was my reaction and the feeling of helplessness. I wish I had been able to directly call her out on it, but that’s something that takes time to learn to navigate in real time. I’m the type of person who needs time to really process a situation and react later. The type of person that takes a few weeks of simmering and thinking about a situation and then write a snark-filled post after fully processing.

And that’s okay.

What’s not okay is how this person reacted to me.

So let’s unpack her reaction together, shall we? Class is in session! (Still feeling snarky…)

A photo of a black woman with glasses in professional attire, paper in hand, teaching while writing with a marker.
Learning time! Photo by rawpixel.com on Pexels.com

1) “I can always tell when people are Autistic.”

Yeah… No, you can’t. I mean, sure, you probably can some of the time. But I’m sitting here right in front of you. I’m Autistic. And you didn’t know. Ergo… no. You cannot always tell. Autistics are all around you; you just don’t realize. So yeah. There’s my “highly logical brain” for you. Sending you common sense. For free. You’re welcome.

Okay, on to the next one!

2) “I work with kids on the spectrum./My brother’s best friend’s cousin’s niece has autism.”

Ok. Well, first of all… I feel bad for those kids. (Is that mean? That sounds mean.) Honestly, anyone that ignorant needs to be further educated before working with Autistic people.

Literally every person is different. Didn’t know I had to say that, but apparently I do. Why would you expect me to be like another Autistic person you know? I don’t shout “You’re neurotypical? But you’re nothing like my friend Sally!?” into your face while maintaining a disgusting amount of gross eye contact. Because it’s silly. Because it doesn’t make sense. Because it’s absurd.

Bottom line–humans are all complex and highly different beings. No two of us are exactly alike. Why on earth would you expect two Autistics to be exactly alike? As the popular phrase goes, “If you’ve met one Autistic person… you’ve met one Autistic person.”

3) “Yeah, ok. We’ll go with that” (insert nasty, sarcastic tone and/or eye roll for bonus jerk points)

Ohhhhhh boy.

So, first of all, you’re heavily implying I’m a liar. You’re implying that my psychologists and therapists are incompetent or misdiagnosed me. Or that I somehow tricked two mental health professionals doing independent assessments of me.

But more than that, you are denying my neurology. You are denying the entire structure of my brain, the way I think, and the awesome things that come along with that. You’re also denying the terrible things that come along with it. You are denying my experience.

You are being ableist, denying my struggles of past and present, denying my identity, being condescending and patronizing, and just generally being an unkind human being all in one go. It’s not a good look…

Bonus “Avoid alienating or pissing off an Autistic” Guide

4) “You hide it so well!/I never would have guessed!”

This. is. not. a. compliment.

I mean, I guess I kind of slightly sort of maybe a little get where people are trying to come from with this? Finding out that the person in front of you is a literal coping and masking wizard who is 1000% of the time exhausted is a lot. It is a feat. But it’s also messed up.

Think about it this way. As a kid, I knew very quickly in school that I was different. I didn’t have a name for it, but I knew. I was bullied relentlessly and I didn’t understand why. I even had a teacher who routinely bullied me.

It was so bad that I started to try to MacGyver together social camouflage to avoid sticking out. (Read 1: Operating Manual for a bit more on that.). My masking, ability to “pass” as neurotypical, and generally inflict extreme harm on my introverted self in order to avoid bullying and aggression is not only an exhausting production that I just don’t know how to turn off, it is the result of years of agony and bullying. Craving friendship and acceptance so much that I mimicked peers I admired. Subconsciously suppressing my neurology, personality, and desires to get by and survive.

After all, that’s such a huge part of why I started this blog—to explore who I authentically am at my core. Because I have had to put so much of who I am away in a little box on a shelf in the back of my mind. And I’m just starting to unpack that box now.

5) “You’re so high functioning!”

There are a few phrases that are bound to make most Autistic people angry, and this is one of them. For one thing, functioning labels are just completely skewed and narrow. Functioning labels hurt all Autistics. Period. (I’m not going to go too far into this, but will insert a link once I find a good one.)

You don’t see the emotional, mental, and physical fallout from my exposure to things like overstimulation, sensory overload, long periods of social activities, or a scary experience. You don’t see my meltdowns or shutdowns (usually) because I have learned to plan out my energy and ability to cope for any given situation or day. This is closely tied to Number 4. Performing “high functioning” comes at a high cost and is just not accurate.

6) “I’m so sorry.”

Don’t be. I love me. I love my neurology (most days). The issues I deal with are related to society:  ignorance, exclusion, assumption, aggression, bullying, inaccessibility, sensory assault, ableism, etc.

7) “Oh, like Sheldon from Big Bang Theory/Rain Man/(Straight white cis man or boy)?”

No.

A photo showing two people sitting at a table, having a discussion. There is paper and pen in front of them, and one person is actively listening to the other.
Listening time! Photo by mentatdgt on Pexels.com

How you should react to someone divulging information to you:

You may find yourself saying, “Okay, Alex. I think I know how to lessen my chances of pissing off an Autistic. So what do I do and say?” While I can only speak from my personal preferences and wishes, these are some things that I would personally love to hear when I tell people:

–Thank you for telling me.

–Thank you for trusting me with this information.

–Cool. My partner is too. (Notice how different this is from the comparison above in Number 2)

–I don’t know much about that. Are there any resources you recommend to learn more?

–I have some questions. Is it okay for me to ask you some?

–How can I better accommodate you?

–What are your needs? How can I help?

28: Chronic Illness: Am I “Broken”?

Chronic illness is something that I talk about a lot in therapy. With diagnoses of fibromyalgia, chronic fatigue, PCOS, Hashimoto’s Disease, a narcolepsy-like sleep disorder, and more, it’s not hard to see why.

From the age of about 12 I’ve been extremely frustrated with my body. And for many years now, I have loudly and vocally proclaimed my body to be “broken,” daring anyone to have the gall to disagree with me.

In one therapy session, my therapist finally did. She asked me why I use the word “broken.” Game on! Well, you asked for it, I thought as my thoroughly thought out list of angsty anecdotes jumped straight to my tongue.

I launched into the daily frustration I feel with a myriad of symptoms that fluctuate unpredictably, the pain I feel 24/7, fatigue that sometimes leaves me bedridden, and all the other fun-filled things that come along with chronic illness. I talked about the things I miss out on, the things I may never be able to do, the toll it takes on my relationships, and the mental health burdens I have as a result.

As I described it, I all but dared her to contradict me… and she did. “Over the next few weeks, I want you to think about the idea of your body being compromised rather than broken.” She asked me to come back next session with my thoughts on the process and left me a lot of freedom in how I approached the task.

I must have looked at her like I do when people suggest that yoga can singlehandedly cure all of my chronic health issues, but I trust her, so I agreed to at least try. I decided to go about my usual routine and wait for frustration with my body to inevitably surface in my mind.

Over the next few weeks I challenged myself to reframe my negative thoughts about my body being broken to my body being “compromised.” To be perfectly honest, I didn’t really expect much out of the exercise, but I was surprised to have a powerful epiphany. The shift from “My body is broken” to “My body is compromised” is incredible and not one that I had anticipated.

“Broken” says that my body is to blame. “Compromised” acknowledges that my body is fighting along with me.

My body is functioning. It might not function in the way that I want. But I am alive. My body often doesn’t have the energy it needs to do what I want it to… but every day it does what it can for me, even if that’s sleep all day. Every second of every day it is keeping me alive, running bodily systems I know little about because I hated biology class. (oops) It endured 18 years of disordered eating and still kept going.

My body is doing its best.

The longer I practiced correcting my mental self-talk, the more I realized how ableist “broken” is and it made me want to tackle and reshape my thinking even more.

I started shifting my frustrations toward the illnesses themselves, and began to think of my body as a vessel that is just trying its best to continue despite daily challenges. The obstacles I face on a daily basis…are things my body is also enduring. Despite the false pain signals it has to process 24/7, despite the fatigue it battles through with me, despite the probably-ever-present warning alarms it must get tired of hearing all day… it functions as best as it can.

It’s amazing how such a subtle difference can make me feel less trapped, more hopeful, and more at peace. Instead of feeling bound to a broken machine, I feel more like I am going into battle with an old, tired, but badass friend.

26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Autistically Alex is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Autistically Alex is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

23: Sensory Series (2) “Picky” Eater

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.

BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating. (See 25: I have an eating disorder. for more on that.)

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.